2nd annual Ichthyosis Day at the K!!!

Wow! What can I say about the support we receive from our friends and family?! It's overwhelming!  Once again a whole crew of Ashlynne's army showed up for Ichthyosis Day at the K this year to cheer on the Kansas City Royals, and to raise awareness for Ichthyosis.  My Aunt Sally came in from Iowa again, as well as several repeat offenders from last year.  We also had many new friends join us, and Ashlynne felt like a little queen again!

This year we went a little bigger and added shirts to the deal. I want to give a huge shout out to Last Chance Graphics in Abilene, KS for donating their time and making the shirts happen, and thus making this fundraiser more profitable.

Some of the crew at Ichthyosis Day at the K

We tailgated to start the day off right.  Then, of course, the kids had to take each grandma to hit up the gift shop.  They're pretty good about double dipping :).  Ashlynne and my friend Amber walked around the stadium in the 9th inning, and someone tossed her a game ball!  So that made her entire night.

Like I mentioned, we went a little bigger and better this year, which is our goal every year.  We added the t-shirts, and my work also did a penny drive to raise $ and awareness for Ichthyosis.  I am so proud of the girls at my salon for raising over $200 in change in the month of May!!!  So far, we have raised about $1500 this month to send to FIRST.  With t-shirt money still trickling in we are hoping that number is even higher by the end of the month!

Ashlynne and part of her army taking in the game

Thank you so much to everyone who has shown support to Ashlynne and our family.  I want to give a huge shout out to Devin, a very special person in Ashlynne's life, who sold a lot of tickets for us and helped make this year so successful.  My husband Russ, who really helped get me on the ball for the fundraising, Thank you, this wouldn't have happened without you.  And once again, Kurt and Kimmy at Last Chance Graphics, your generosity is so appreciated, and we thank you so much!!!

Oh, and one more thing, for the 2nd year in a row, the Royals won on our day!!! Go Royals and go Team Ashlynne!!!

Ashlynne's Army

I feel like the most common question I get asked by people is how do I keep up with everything... How do I do it?  How do I keep up with the activities of all 4 kids, work 40+ hours a week, maintain friendships and relationships, and care for Ashlynne's Ichthyosis on top of all of it?  The answer is... With a lot of help.  I couldn't do what I do without an amazing army of support behind me.  I have a very understanding husband, who gets that he can't always be the center of attention, and that we both have to make a lot of sacrifices to make our life work.  He stepped right up to the plate from the second he met us, and took on me (which is a chore in itself!) and took on Ashlynne's care without even batting an eye.  Financially, he has helped care for her in many ways and has helped provide things that I couldn't have on my own, and emotionally, I don't even have any words for what he has provided for the two of us.  I have very caring, understanding friends that get it that we can't always drop everything and go, like the average family.  Every evening has to be planned well enough to fit in Ashlynne's bath and skin care routine.  And we have definitely been blessed, because a lot of our friends will come to us if they know we are planning a late night!  Some of my girlfriends will even step up and start lathering lotion on Ash's back to make it go faster so we can both get back to the group.  Because everyone knows Ashlynne definitely does NOT want to miss out on anything!  We have a good friend, Bobbie, who has helped us figure many things out as far as insurance, and medical care.  We have been blessed with AMAZING teachers who have taken a very keen interest in Ash, and have done their best to help her physically and emotionally.

But most of all, I am blessed with an incredible family.  My parents picked up the slack from the very beginning.  When Ash was born, it took me a while to get my head above water and even wrap my mind around the disorder that affected her.  During this time, it was my mom that was researching every product and finding every support group she could. She has always been there to help give me a break if I just need a weekend away, and for a shoulder to cry on on those days when it starts to feel like too much.  And my dad has always been that guy that let me get the tears and anger out on those days where I ask myself "why her?", but has always been strong enough to tell me that it's time to put my big girl pants back on and get through the tough times. Neither Ashlynne, or I would be where we are at today if it wasn't for all of the unwavering love and support they have shown us on this journey.

Our rock

My, and Ashlynne's biggest cheerleader

It is because of all of these people, and many others that I have not mentioned, that we have been able to give Ashlynne as "normal" of a life as possible.  Thank you to every single one of you for your support, for being a part of our lives, and for sharing our story!

Partners in Crime

May is Ichthyosis Awareness Month, so I am doing my best to spread the word as much as possible about the disorder that affects Ashlynne.  As I was wracking my brain for new, different ways to promote it, I was thinking about how I have written about how it affects her, and how as a mom it affects me, and it got me thinking about her best friend, Anika.

Anika and Ashlynne with their new BFF necklaces

These girls have a friendship going back to kindergarten.  And I always knew how much they enjoyed each other, but this year I have come to realize just how much of a bond they have.  At parent teacher conferences this year, Ashlynne's teacher told me that she has never seen a friendship like theirs.  Anika waits by the classroom door every day for Ash at lunch, recess, and at the end of the day.  She helps her when she can't reach something, and she waits for her when she is moving slower than the rest of the kids.

When Anika stayed the night this Friday, I asked her what her favorite thing about being Ashlynne's friend is.  She replied with "only one? There's so many things", while tapping her finger to her chin.  The she told me that it was probably the fact that they always look out for each other.  I expected her to follow up with things like, when people are being mean to Ashlynne, she sticks up for her, or when people are staring, she gets them to look away.  But instead she said that when someone is mean to HER, that Ashlynne always defends her. And that when SHE is having a bad day, Ash can cheer her up.  Her responses really surprised me.  I always prayed that Ashlynne would have good friends, and that people wouldn't just be her friend out of pity, because they felt sorry for her.  Right then, I realized God answered that prayer in the form of Anika.  I truly believe that when Anika looks at Ashlynne, she doesn't even see her Ichthyosis, she just sees her friend.

I've always thought that Ashlynne having physical differences was really going to have certain perks when it came to dating.  Such as, the person that she ends up with will really truly love her for her. It won't be a superficial love.  It might really save her from getting her heart broken when she's a teenager or young adult.  Lately, I've come to realize this to be true when it comes to her friendships as well.  Her core group of friends are going to see past all of the differences on the outside, and see her for the beautiful young lady she is on the inside.  And Anika has been doing that for 6 years now. I firmly believe that she has made a world of difference in Ashlynne's life.  See, as I've said before, Ashlynne's Ichthyosis doesn't only affect her, it affects everyone who loves her.  Anika included.  Some day, Anika will have to answer those questions, such as "What's wrong with your friend", or "why is she so red?".  But she doesn't let it stop her from hanging out with Ashlynne. When Anika stays the night, they have to take time out for Ash's bath, they can't play outside if it's too hot, but... She doesn't care.  She just wants to hang out with her best friend.  She doesn't let it affect her in a negative way.  And I think that's something that a lot of adults could learn from her.

And by the way, when I asked Ash what her favorite thing about Anika is, she said "we have so much fun together, and she just gets me". Pretty powerful statement if you ask me....

Chivalry is not dead

As a mom, I have had a lot of little moments that have made my heart overflow with joy, but recently, I had a very distinct moment of my heart overflowing with pride.  I have to take some time to brag on my Gavin.

Last week, Ashlynne had her spring music program.  It was about the United States, and they sang various patriotic songs.  At the end, they sang the Armed Forces Medley, and asked all service members and veterans to stand and be honored when the song from their military branch was played. When the first song began, and elderly man, probably in his 80s rose, along with many others in the audience.  Out of the corner of my eye, I see Gavin start to stand up.  For any of you who are very familiar with my family, you may know that Gavin tends to be the light hearted, goofy one.  So in a brief moment of horror, thinking that he was standing to be honored, I started to hiss at him to sit down... But then I noticed his outstretched hand, and it hit me what he was doing.  He reached out and shook that old man's hand, and told him "thank you".

I was literally speechless.  I never would have dreamed that my 8 year old understood the huge sacrifice that the men and women of our Armed Forces make.  But some how, he gets it.  I was choking back tears.

The next morning, as I was dropping him off at school, I waited by the curb until he got into the building, like I do every day, and I saw him start to come back outside.  He just stood there, with the door open, holding the door for 2 little girls walking in.  At that moment it hit me,  he's not a little boy anymore, he's an amazing young man.  Some day, he is going to make an amazing husband.  But in the mean time, he is an amazing brother, a great friend, and a perfect gentleman.  Chilvary is not dead, ladies.  And my Gavin Lane is living proof of that.

I don't know what I did to deserve to be this little guy's mommy, but I'm one lucky lady!

A few tips from your friendly neighborhood Hair Stylist

Coming down from the busiest month of the year, I just thought I would pass along some advice.  Here are a few random tips that your hairdresser may be too nice to share with you. Lucky for all of us... I'm not that nice :). Enjoy!!

1.  When you ask us to "hook you up", what you're really asking us to do is basically hand you money out of our own pocket.  Most of us are commission based, or self employed, which means... time = money.  Believe it or not, we are not making a killing off of you.  We paid $10,000-$20,000 for an education that we may or may not still be paying on.  We have overhead costs, continuing education costs, and someone had to pay for that color I am putting on your hair, and if it's not you, it's me!  We have to buy our shears, and pay to maintain them, we have to buy our own brushes, appliances, and product.  We have to pay to replace the clothes that we ruin with color almost every day, and to replace the bras, that after a few wears have hair stuck in them that you can never get out.  In other words, it's not free for us to come to work, so we certainly don't want to work for free.  We offer discounts and promotions when we can, but when we do give you a discount, graciously accept it, don't EXPECT it.

2.  So you're ready for a major change, but you don't want to lose any length, you don't want any layers, you don't want to do color or a perm, and you don't want your eyebrows waxed??? I'm sorry, but there's nothing I can do for you then!  Go buy a new outfit.

3.  I CAN NOT give you 3 layers.  Well, I can, but I can also promise you won't like it.  You pick where you want your shortest layer, you pick where you want your length, and we blend from there.  Trust me, you don't want me to chop 3 layers into your hair.

4.  3 terms your hairdresser can't stand: die, pluck, and roots.  People die... You COLOR hair.  You PLUCK chickens, you TWEEZE eyebrows.  You have "regrowth" or, you just need to get your hair done, but ROOTS are for trees.  Know that your stylist is silently cringing if you use these words.

5.  I would rather fix your hair and have you happy, than for you to leave hating your hair because you're afraid to hurt my feelings.  It's not going to hurt my feelings if we tried something and you don't like it.  Anything is fixable.  We will figure it out!

6.  Hair doesn't fix itself.  One of the biggest complaints I hear from people in my chair is that they can never get their hair to look like It does when I do it.  Your hair will never look like it does when your hairdresser fixes it if you don't buy the products necessary to style it.  We don't recommend these products just to try to sell you something.  Once again, believe it or not, we're not making a killing off of the product either.  We are tryng to give you the tools to put in your tool box to make it easier for you!  Just like the house doesn't clean itself, your hair doesn't fix itself.  You have to do what it takes!

7.  If Pantene worked as well as the commercials say, all salons would carry it.  Don't ask me what you can buy from Walmart that will work.  I, personally, will not recommend anything from a discount or grocery store.  In fact, I don't even know what they carry!  And by the way, the only way to fix split ends is to trim them, all Pantene and other like products are doing is coating your hair in wax, causing more build up, which leads to less shine, and less volume.

8.  Just as I have the ability to brighten your day, you have the ability to brighten mine.  I have some of the best clients.  There have been plenty of days that they have completely turned my day around.  On the flip side of that, there have been a lot of days that have been ruined due to someone taking their bad day out on me.  Bottom line... We're people too!  But always remember, don't be mean to the girl with the scissors.  Unless you have eyes in the back of your head, you can't see what I'm doing back there ;).

9.  Don't call me on a Saturday, 2 hours before I get off, and expect me to be able to squeeze you in. Sometimes, I can.  But a lot of times, I just can't.  It's not always possible for me to stay late to get someone in just because they didn't plan ahead.  If it's that important that you get your hair done, plan ahead... We have to.

10.  The biggest compliment you can give me, is a referral.  If you love your hairdresser, assure that she stays in business, and spread her name around!

Spring 2014... Bring it on!!!

I don't mind winter. In fact, I love fall, it is my favorite time of year.  But I can honestly say, I have never been so ready for spring before in my life!  I'm ready for the renewal, and the new life spring seems to represent.  We had a tough fall, with the unexpected loss of my cousin, Rochelle.  And winter just seemed to drag out, with the multiple LARGE snowfalls, my mom breaking her foot,   And the utter lack of energy I had. February and March are a very high stress time for me at work, and of course that was proceeded by the busy hustle and bustle of the holiday season.  Not that there weren't good times in there, because there certainly were.  One of them being our "big kid" trip to Vegas in February.

Russ and I at New York New York after the dreaded roller coaster ride!

So bring on the warmer weather, bring on April, and bring on baseball season (go Braves!!!)

This spring we have our 2nd annual Ichthyosis Day at the K planned, with a very good response already!! Yay!! Thank you "Team Ashlynne"!  We are very much looking forward to that and are hoping to make it bigger and better than last year.  We also have a trip to the Wizard of Oz museum planned.  We have a certain little toddler that currently has her Papa watching that movie at least a couple of times per weekend.

Breckyn's 3rd birthday happens to fall on Easter this year, so that will be a very busy weekend for us. Aunt Carol is flying in for her birthday weekend, and our friend Shane is coming down from KC, so she will be very excited about that!

Logan will be graduating from preschool this year.  We will officially have another one in school!  And Ashlynne will be making the big transition into middle school.  Time really does fly. And Gavin is gearing up for baseball season, and has promised that he is going to help Logan learn how to play, as this will be Logan's first summer that we have him in t-ball.

Russ is working for the Salina Bombers again this year.  This is our local arena football team. Last year they finished as CPIFL Runners Up.  Pretty good for the organizations first year.  But as a perk for Russ working for them, I get into the games!  They are incredibly fun, and incredibly brutal.  And I love every second of it!  I'm going to take Misty and Seth to their first game in a couple of weeks.

But this weekend, was all about Elmo.  We took Breckyn to Sesame Street Live in Wichita on Sunday.  Of course, when Russ's mom and I are involved there has to be a certain degree of shopping involved.  So we left plenty early and stopped at the mall first.  Russ was quite he trooper for that part.  Breckyn had a blast, and thanked her grandma at the end of the night for her "best day ever".

Miss B at Sesame Street Live 

Grandma Susie and Breckyn

Russ, Breckyn, and I 

I think he was excited too!

But her reaction was priceless!!!

2013 recap

Ok, I have really been slacking on my blogging lately!  So I just thought I would post a recap of our year, and share our highs and lows.

In January, Ashlynne turned 10, which I was VERY emotional about, however, soon the pre-teen attitude set in!  This dried up my tears rather quickly!

In February, Russ and I went to Florida with his parents for vacation.  When we left Abilene, there was not a drop of precipitation on the ground.  However, the next morning when we were preprint to leave, literally 2 feet of snow was dumped on the ground, stranding us in KC, and delaying our flight for a day, thus forcing me to consume entirely too much wine!  We made it the next day, went to the NASCAR race, where we witnessed a horrible wreck on the last lap resulting in an engine flying into the stands and multiple fans being injured literally rows in front us.  We left in a hurry among all of the ambulances and panicked spectators.  The highlight of the trip for me was getting to see Krista, a long time friend who moved to Orlando the previous April. This was the longest I had ever gone without seeing her.  We went to Epcot Center and spent a day catching up.  On the day we were to leave, Kansas got slammed with another snow storm, delaying our flight home by a day.  I was so ready to get home at this point it wasn't even funny!

April brought Breckyn's 2nd birthday and a visit from my Aunt Carol.  She was able to be here for Breckyn's birthday party, which was very much a bonus!

In May, we held a fundraiser for FIRST at a Royals game and had a week long visit from our good friend Jordan.  When we wrapped that week up, Russ and I traveled to North Carolina to see Alexis and Danny. I blogged all about this amazing trip, but it was still worth a mention again!  This was definitely one of the highlights of my year!

We had a great summer with the kids full of ball games, swimming, and little "mini vacations" to Omaha and to Kansas City. I treasure my time off with the kids dearly. While it can be very stressful, I wouldn't trade it for the world.  The summer ended with the official start of school on Gavin's 8th birthday!

After school started back up it has been a flurry of activities. The older kids are doing great in school, and both had great conferences.  Then we had Halloween, and of course Thanksgiving started the official holiday season.  That means extra hours and lots of business for me at work.  It is an exhausting time, but I love the holidays.  Logan turned 5 December 8th, and we also had him the week between Christmas and New Years.  It's so nice when we have him for longer than a weekend and can really enjoy our time with him.

2013 brought a lot of changes for me with work.  My job has become more demanding of my time with changes in the hierarchy of our company.  All I can hope is that some day it will pay off.  Sometimes I question whether or not it is worth missing out on as many of the things that I do, but I love my job and my clients, and the girls that work for me, so for now, I will keep plugging away!

I hope that 2014 is as good to us as 2013 was!  We have 2 trips planned for the year, 1 to Vegas in February, and 1 to Indianapolis for the FIRST conference in June.  Other than that, we will see what the year holds for us!  But each and every day, I am reminding myself to count our blessings, we are all healthy, and together, and at the end of the day, that's what matters!

Happy 2014 from the Cossels!